Aussie mum living with chronic pain

The Fear (aka chronic pain and socialising)

I spent the Christmas holidays after I finished year 12 hanging out with girlfriends, going from one party to another. It was my first real taste of freedom and I loved it. Looking back, I realise that one of my girlfriends was perhaps not having as good a time as I was. You see, she got into the habit of cancelling at the last minute. I’d be getting ready and she’d phone to say she wasn’t coming. At the time I couldn’t understand it. Why would she cancel? It was a party! Our friends would be there! How could she not want to go? Why would she want to stay home?

Nowadays, my brain screams “No!” at the very mention of a party. It doesn’t even have to be a party, any old get together will do. Lunch, dinner, drinks. Any social invite and my mind is in overdrive coming up with a reason I can’t attend or, at the very least, a reason why I might not be able to attend so that I can effortlessly pull out later if the need arises.

By now I’m sure you’re questioning how I keep friends with an attitude like this. “What an antisocial cow!” The thing is, I’m not antisocial. I have amazing, beautiful friends who I love spending time with. The problem is, doing so, spending time with friends hurts. Both physically and mentally. I’ve spoken before about the hypersensitivity of chronic pain.Every sensor in my body is heightened. Every aspect of socialising – walking, sitting, standing, talking, listening, eating, drinking… causes pain and exhaustion. Coupled with this is the fear of the unknown. Will there be somewhere I can sit to rest my knees? Will the chair be high enough but not too high? Will there be somewhere I can stand if my back gets too sore? Will there be room to walk around and stretch my legs? Will I then lose my seat? Will I have to be “on” the whole time? …

So many questions run through my mind. The most significant question being Will I be able to leave when I want to? Chronic pain and its never-ending list of associated conditions can be unpredictable. I can be feeling great; laughing, having fun with friends one minute and the next my body has had enough. My legs or back or neck or (you get the picture), some part of my body will be screaming out that it’s done. A wave of tiredness could come out of nowhere to tell me my body needs to sleep. My brain could decide to turn into a fog of confusion unable to recall even the most basic words (like basic or words). It is at this exact moment, when my body has had enough that I need to leave.* Unfortunately, saying I need to go home half an hour after you have arrived or before you’ve spoken to a certain person or before dessert, saying you have to go before the socially agreed upon timeframe is generally not a welcome comment.

Even if that part is easy, there’s the goodbyes – this could take one minute or twenty – and then actually getting home. Do I have to drive? I hope my brain hasn’t turned to mush and my body still works. Do I have to wait for a taxi? Do I have to catch public transport? How far do I have to walk?….. The fear of the unknown, the questioning, starts again.

What then can make socialising easier for people in chronic pain? I myself don’t want to turn into a hermit. (Well, not all of the time). I love my friends and I don’t want to lose them. The answer is simple**, communication and honesty. I never say yes to an invitation I know I’m definitely not going to be able to make. I only give an unequivocal yes if the event is something that I won’t miss no matter what my body is doing, like a wedding. To everything else I give a conditional yes – “I’ll try my best to make it”, “I’d love to assuming I’m not too sore from the week”. With close family and friends this conditional yes isn’t necessary. They understand if I have to cancel, even at the last minute. They know that I would rather have spent time with them than be unable to go out.

I’m also very honest about when I need to leave and why. There’s no need to go into detail, a simple “I have to go now, I’m sore” should be enough for those who care about you. The key is to then make a shift exit, get home as quickly as possible, gather whatever necessary items you need – heating pad, tens machine say – and hit the bed happy that you have seen your friends and made it home in time so that your body will allow you do this all again next time.

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* I can hear my pain specialist reminding me that it is actually before this moment, before my body gets to this moment that I should have left. But, as I said, fibro is unpredictable and knowing when enough is enough is not always possible.

** In saying that communication and honesty are simple I one hundred percent acknowledge how hard it can be to communicate about chronic pain with those who don’t have chronic pain. This takes times and patience, for both you and your loved ones. The more you can educate your loved ones about chronic pain, in particular what makes your pain worse/better, the easier it will be when you don’t have the energy to do this.

This is so spot on. Not many people understand how hard it is, how severe and debilitating the pain really is. And let’s not forget the fatigue. Driving home from Michigan once I asked my daughter to take over because I could feel the fatigue coming on and knew it was going to be bad. She said sure. How about the next town its 15 miles away? No, I said I need to pull over now. I was out in less than 30 seconds. I am thankful for the family and handful of good friends who really do understand. It helps not to be so isolated.

It still surprises me sometimes how quickly the fatigue can come on. I can’t imagine how I cwlhls cope without the help of my family and friends. I’m glad you have the same supportive group around you. We are very lucky on that respect.